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Menopause

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HRT seems to have stopped 'working' ...

15 replies

GlomOfNit · 07/02/2023 10:57

...and I'm really pissed off about it! Not sure how to proceed really.

I'm 49, have had perimenopausal symptoms since at least 44. I've been on Sandrena oestrogen gel (now at full dose of 2mg, worked my way up gradually) and 2x Utrogestan 12 days a cycle, since March last year. I'm also using Ovestin cream on my sore nethers every few days, that's been over the last 2/3 months.

I'd say it took a while to kick in, but encouraged by a medic friend who has educated herself about perimenopause to the extent that she now runs seminars to educate fellow medics, I went to 2mg of the gel a day and realised that my horrible night sweats had stopped! Hooray! No more waking at 3am soaked through and having to change. My palpitations (which was actually the main reason I started on HRT) had diminished considerably and I was no longer finding it hard to settle to sleep on my side because of the way my heart was banging and flipping around (disclaimer: I've had a few ECGs and other checks, conclusion was that it was down to oestrogen depletion). My side-breast pain just went. I wasn't getting the pain in my pelvic area from ovulation to period much at all. I can't say I had a lifting of my mood, or any surge in energy or indeed libido (ha!) but it was definitely having a beneficial effect.

The last 2/3 months, most of this has STOPPED quite suddenly. I got such unpleasant breast pain I went to the GP who couldn't feel anything and decided it didn't warrant a referral. (I know this is in line with current guidance on breast pain not being an indicator of cancer on its own.) The sweats are BACK and I'm back to waking up clammy and shivering, and having to change my top. And most distressingly, the palpitations are back with a vengeance. Sad They really do make me feel unsettled and anxious.

My medic friend said yes, unfortunately it can sometimes stop having an effect, and suggested that storage (by the suppliers, chemist or me) at less than optimal temperatures might be a factor. I have no idea how long the shelf life of my HRT is, so no idea if the crazy temperatures last summer might be in play. Obviously getting a different batch and trying that, would test that hypothesis. But I have no way of knowing if another batch might also have got too hot.

If we discount that possibility, is there anything else I can do? My GPs were fairly reluctant to prescribe HRT and came out with a lot of old bollocks about 'not being allowed' to be on it more than 5 years, not ticking the right boxes for peri (I really was!), getting by on the lowest possible dose, etc. I'm concerned that if I go back and say - look, this regime isn't working now, what next? They'll just shrug and say, oh well, we tried, it's not for you, come off it since it carries a risk and isn't doing anything for you now. I mean, I would obviously disagree but I foresee a battle! My friend suggested that our own hormonal load peaks and troughs in these years - so possibly this is a blip and should I ride it out on my current regime?

OP posts:
ColdCycle · 07/02/2023 11:07

I think you might be on to something with a dodgy batch.
You could ask for a repeat prescription and go to a different pharmacy and make sure you get a different batch (take your old bottle).
Although I suddenly started getting the night sweats again but i saw my Dr and upped my dose to 4 pumps (which is 6mg of estrogen) and that sorted it out again..... so I don't think you are at your maximum dose there. But speak to a doctor about this as I am not medically trained. (Speak to a different doctor as another might be better informed?)

GlomOfNit · 07/02/2023 11:12

I'm not on a pump dispenser, Sandrena is in little foil sachets, I use 4 of the .5 mg ones a day (and I find the bloody things EVERYWHERE! Grin ) which amounts to 2mg of oestrogen. Some on here will tell you that's 0.5mg over the recommended dose and the information sheet in the box does indeed confirm that. However, my GP (the more helpful one I saw about my boobs last month) says this is fine. My very qualified medical friend said 2mg is what we should be aiming for. I think I'd probably need to be told to go to a higher dose by a specialist (which none of the GPs at my practice are, they have to look up Sandrena doseage on the internet while I'm sitting there).

So, did upping your dose make the sweats stop again? Are you really on 6mg of the active ingredient??

OP posts:
JinglingSpringbells · 07/02/2023 11:27

I wouldn't worry too much. The obvious answer is to increase your gel dose.
2mgs is pretty standard for someone young (which you are!) I am decades older than you and am 1.5mgs gel.(started HRT at 53.)

Why not use one more 0.5 sachet and that will give you 2.5mgs a day? See how that goes. It's not a big deal- some women need less, others more. Younger women tend to need more especially in peri.

@ColdCycle 4 pumps of gel is not 6mgs! each pump is 0.75mgs estrogen so you are on 3mgs,

JinglingSpringbells · 07/02/2023 11:30

ps

The dose of Oestrogel is anywhere from 1 pump to 4 per day.
2 pumps= 1.5mgs is the suggested starting dose but some women go lower or higher up to 4 pumps.

4 pumps per day is 3mgs.

This is in the leaflet (I know you are using Sandrena, but they are basically the same thing just different packaging.)

You definitely don't need to see a specialist as it's basic stuff that you're dealing with here - just try upping your dose for a few weeks.

ColdCycle · 07/02/2023 13:19

JinglingSpringbells · 07/02/2023 11:27

I wouldn't worry too much. The obvious answer is to increase your gel dose.
2mgs is pretty standard for someone young (which you are!) I am decades older than you and am 1.5mgs gel.(started HRT at 53.)

Why not use one more 0.5 sachet and that will give you 2.5mgs a day? See how that goes. It's not a big deal- some women need less, others more. Younger women tend to need more especially in peri.

@ColdCycle 4 pumps of gel is not 6mgs! each pump is 0.75mgs estrogen so you are on 3mgs,

Of course it is (3mg)... brain fart. I'm usually quite bright. Not today.

picklemewalnuts · 07/02/2023 13:23

Jingling, can we just up the gel and see what happens?

Will my chin hair reduce if oestrogen increases (shallow, I know).

How do I know if I'm taking too much oestrogen?

it's all about mood and brain fog for me. GP said no to testosterone.

Seeing the GP is still hard round here. Just want to get my dose right to find out if it will help!

BOOTS52PollyPrissyPants · 07/02/2023 14:17

I was on the same as you with those little foil sachets and they drove me mad as take ages to dry in winter and just stopped working for me also after 8 mths and I went through months of hell so I went back and changed and got Oestrogel and take 2 pumps daily and the difference is unreal. Am also on the progesterone 2 weeks on and off. Please go and ask for the gel as I feel like a different person again and it is so easy and quick to use. Flushes, high anxiety and dread all gone and wish had been prescribed the pump ages ago as the difference compared to gel sachet unreal. Wishing you all the best and you will notice the difference straight away.

JinglingSpringbells · 07/02/2023 15:51

picklemewalnuts · 07/02/2023 13:23

Jingling, can we just up the gel and see what happens?

Will my chin hair reduce if oestrogen increases (shallow, I know).

How do I know if I'm taking too much oestrogen?

it's all about mood and brain fog for me. GP said no to testosterone.

Seeing the GP is still hard round here. Just want to get my dose right to find out if it will help!

Obviously I'm not your dr but the whole point of gel - I was told by my consultant- is that the patient is able to change the dose (compared to having to ask for different patches or tablets.)

The limit that is licensed is 4 pumps a day. That's on the leaflet.

You are supposed to use enough to make your symptoms better and stop increasing once they are under control. That might be 1 pump for someone and 4 for another woman.

picklemewalnuts · 07/02/2023 16:27

Oh amazing! I thought I was sentenced to the allocated ration until I managed to score a GP appointment. So much easier to get illegal drugs than the prescribed ones at the moment 🤪

GlomOfNit · 07/02/2023 16:37

Thanks, Jingling. I did indeed go and use 5 sachets (2.5mg) this morning and will give that a shake for a week or so and see if it helps.

I've often wondered if, for me, it's an absorbtion thing. I stick it on my thigh but sometimes maybe not as 'inner' as it could be, so perhaps not the optimally thinner skin? I spread it as thinly as I can and wipe fingers off on the other thigh, as it was taking 45 mins to dry when it went on thicker. If I'm in a hurry and it's still tacky to the touch after 15/20 mins, I sometimes blot it with a tiny bit of talc as it sticks to my tights otherwise. But I do wonder about trying patches, even if you can't titrate the dose as easily. Maybe, with current patchy patch availability Grin it's not the time to switch over though.

OP posts:
ColdCycle · 07/02/2023 21:49

@GlomOfNit the pump gel dries much quicker than that.

ColdCycle · 14/02/2023 11:48

@GlomOfNit How have you been with the increased dose?

HairyKitty · 23/03/2023 07:56

It is a big deal to self increase your hrt dose as you will surely run out and not be prescribed enough to support your new regime at your next prescription?
OP I’m wondering if you switch to oestrogel I have a feeling that’s licenced to a higher max dose?

HesDeadBenYouCanStopNow · 23/03/2023 08:12

My symptoms don't fully go away on the base dose, I need a bit more

With my gel I was told I could go up to 6 pumps as needed but prescription base was 2. I needed about 3 1/2 pumps to keep night sweats gone

With patches now the standard prescription is 2 patches a week but I'm using 3 by cutting one in half and wearing 1 1/2 at a time.

Hormones are different for each of us and the dose takes a bit of adjustment.

I'm still getting some breast pain at around the time I should be having a period though.

667TheNeighbourOfTheBeast · 25/03/2023 12:13

Not had any experience of the gel but I’ve been using patches for years and have had to increase the dose , I started on a very low dose patch 25mcg and this helped but after a few months symptoms came back so was advised to increase it. I also had problems with absorption and consultant changed the patches. It’s complete bollocks that you are only “allowed” to stay on it for 5 years. It should be reviewed on an individual basis depending on your overall health weight blood pressure ,family history etc. Your oestrogen levels are naturally going to get lower over the years too so what was ok at 44 years may not be enough at 49. Also NICE guidelines which is what GPs have to work by, say you are entitled to ask for a referral to a menopause clinic if you’re experiencing problems that your GP doesn’t know how to treat or proceed. Perhaps mention this to them if they are dismissive.

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